MsHearthWitch, to mentalhealth
@MsHearthWitch@wandering.shop avatar

Trying to fight my way thru this pain flare with a perfect latte, Unsleeping City, and a gentle cleaning of my desk in an effort to safeguard my mental health.

#Dimension20 #PainFlare #ChronicPain #MentalHealth

janetlogan, to spoonies
@janetlogan@mas.to avatar

I have been dealing with an #IBS flare all evening. It's painful, and feels like PMS cramps must feel. I am tired, sore, and unhappy with the world right now.

@spoonies

#spoonie #ChronicPain

tomkindlon, to disabled
@tomkindlon@disabled.social avatar
Krosen_nw,
halcionandon, to mecfs
@halcionandon@aus.social avatar

#Boost please

GPs in clinics waiting for me to:

  1. Go into aged care (I’m not aged.)
  2. To see a GP (Who works in their clinic.)
  3. Because I don’t fit their business model. (They won’t visit or Telehealth me even if I see them.)

Someone help me! 😭

❤️🔄💬

@mecfs
@chronicpain @chronicillness
#PwME #MEAwarenesshour #MECFS #ChronicPain
#ChronicIllness #PwLC

halcionandon, to mecfs
@halcionandon@disabled.social avatar

#Boost please

GPs in clinics waiting for me to:

  1. Go into aged care.
  2. To see a GP (Who works in their clinic.)
  3. Because I don’t fit their business model. (They won’t visit or Telehealth me even if I see them.)

Someone help me! 😭

❤️🔄💬

@mecfs
@chronicpain @chronicillness
#PwME #MEAwarenesshour #MECFS #ChronicPain
#ChronicIllness #PwLC

maggiejk,

@halcionandon @disabilityjustice I am in the US and my pain management provider usually only makes me go in every other month I just called for a refill on the off months.

Last month I asked if I could increase my dose by 5 mg a day because I’m just not getting enough coverage with the amount of insomnia that I experience. She agreed but only if I would come in next month rather than call in. I laughed and I was like yeah I can come in whenever I’m like 15 minutes down the road. But I am well aware that they are just trying to get as much revenue as they can before the end of the year. And I’m not objecting because I really do need the extra 5 mg. But it feels gross that it was presented that way.

And man, just having that extra 5 mg if I need it made such a difference, I have noticed that about half the days I don’t even take it because I don’t need it. But knowing I have it if I caused myself extra pain makes it easier for me to do what I need to do because I don’t have to worry that I will be an extra pain later because I can do something about it if I am.

Of course I still have to pace because of the #MECFS but at least I know I don’t have to put myself to bed at 6 PM on a heating pad because the pain is just overwhelming.

#ChronicPain

halcionandon,
@halcionandon@disabled.social avatar

@maggiejk @disabilityjustice

If if I came in they wouldn’t help. I’m too complex.

Here they get paid for Telehealth so it makes no doctors difference in terms of money.

I’m severe heading to very and it doesn’t matter they’d rather see me get worse to fit their model

#ChronicPain

appassionato, to books
@appassionato@mastodon.social avatar

The Way Out: A Revolutionary, Scientifically Proven Approach to Healing Chronic Pain

A groundbreaking mind-body protocol for chronic pain.
Chronic pain is an epidemic. 50 million Americans struggle with back pain, headaches, or some other pain that resists all treatment. Desperate pain sufferers are told again and again that there is no cure for chronic pain.

@bookstodon
#books
#nonfiction
#SelfHelp
#ChronicPain
#PRT

geoffjobson, to KindActions

Hey folks,
I'm a full time caregiver for my partner and self-employed at the same time. I just had a couple of contracts delayed and am now in a bind. If anyone could help us out with $200 to get food and medication for the next week we would be very grateful.

https://paypal.me/geoffjobson?country.x=ZA&locale.x=en_US

#mutualaid #chronicpain

geographile, to Discord
@geographile@sfba.social avatar

A lot of the community on Twitter seems to have dissipated since Twitter went kaplooey, but the channel is still there. It doesn't seem very active these days, but it's there, and we would love to see you if you have or a illness. Come join us, we're nice people.

https://discord.com/invite/nuh9TTsj




aby, to Autism
@aby@aus.social avatar

Disabled people are treated like our bodies, our stories, are public property - especially so for those of us who are Aboriginal, who are Black, or People of Colour, who are trans or queer, or read as women.

Consider that if someone with a disability is posting their mutual aid links, either give/share/support or just move on.

Don't message us asking why we're disabled or why we're not on disability support pensions - that's nunya. NUNYA.

#audhd #autism #adhd #disability #neurodiverse #MentalHealth #Anxiety #MentalIllness #ocd #PTSD #agoraphobia #cptsd #fibromyalgia #ChronicPain #ChronicIllness #Medical #Aboriginal #Indigenous #MutualAid #anarchism

halcionandon, to mecfs
@halcionandon@disabled.social avatar

please

How many days meant to wait after stopping before starting ? Have prescribed LDN. It used to be 3 days standard but now? Dosage? I got 1.5mg but can pull apart capsules.
What happens when start LDN?
Your experiences also help. I know many out there been through this.

System has pretty much abandoned me. Don’t ever live in wrong postcode.😔


@mecfs

@chronicpain

@chronicillness

@longcovid

@neisvoid

tomkindlon, to chronicillness
@tomkindlon@disabled.social avatar

UK Government Response to the Work Capability Assessment: Activities & Descriptors Consultation

The report follows the public consultation & details planned changes to the rules & assessments for existing & new claimants

https://shorturl.at/csAW2

Some people on 🐦 found it less bad than expected

@disability @disabilityjustice @spoonies @chronicillness #chronicillness #chroniclife #ChronicPain
#Spoonielife #hiddenillness #invisibleillness
#ChronicIllnesses

appassionato, to books
@appassionato@mastodon.social avatar

The Pain Survival Guide
How to Reclaim Your Life

If you suffer from chronic pain, this proven 10-step program brings hope and relief, showing you how gradual changes in specific behaviors can lead to great improvements in your ability to cope.

@bookstodon
#books
#nonfiction
#ChronicPain
#SelfHelp

halcionandon, to disability
@halcionandon@aus.social avatar

Been awake 5 days trying to secure GP. Looks like facing stopping medication cold turkey because nobody wants to help. No meds security. I just keep getting sicker.

I need sleep while still have meds.

If any tips for withdrawal from fentanyl 25ug please help. Don’t think body can handle it. I don’t know what to do.

Mushrooms? I’m so exhausted don’t fucking know.

This is what they do to sick people in Australia. 😭

#ChronicIllness #Disability
#ChronicPain #MedMastodon
@chronicillness @chronicpain @medmastodon
@mecfs

halcionandon, to chronicillness
@halcionandon@disabled.social avatar

Been awake 5 days trying to secure GP. Looks like facing stopping medication cold turkey because nobody wants to help. I just keep getting sicker.

I need sleep while still have meds.

If any tips for withdrawal from fentanyl 25ug please help. Don’t think body can handle it. I don’t know what to do.

Mushrooms? I’m so exhausted don’t fucking know.

This is what they do to sick people in Australia. 😭

#ChronicIllness
#ChronicPain #MedMastodon
@chronicillness
@chronicpain
@medmastodon

edsuom, to Futurology
@edsuom@hachyderm.io avatar

If you’ve been infected with this virus, the gray matter in your #brain may have changed whether you notice anything or not: https://www.cidrap.umn.edu/covid-19/mri-study-spotlights-impact-long-covid-brain

"’We noted gray matter alterations in both patients with #LongCovid and those unimpaired after a #covid19 #infection,’ said [lead study author Alexander Rau]. ‘Interestingly, we not only noted widespread microstructural alterations in patients with long COVID, but also in those unimpaired after having contracted COVID-19.’”

#NoToBrainInfections 🧵

edsuom,
@edsuom@hachyderm.io avatar

@dave @jmichaelsturm Dave, I appreciate your sharing this. The only reason I think I might understand what you’re going through a little bit is having spent two years with after an injury three years ago.

This past year has been nearly pain-free after some slow healing I’d all but given up on. I sincerely hope that happens for you, too.

Respect and empathy.

podkaynelives, (edited ) to mecfs

Same.

"A disease of the lady Madeline had long baffled the skill of her physicians. A settled apathy, a gradual wasting away of the person..."

  • The Fall of the House of Usher, Edgar Allan Poe

#ChronicPain
#fibromyalgia
#POTS
#LongCovid
#MECFS
#Poe

janetlogan, to spoonies
@janetlogan@mas.to avatar

Taking some Tylenol and lying down for a bit. Headache, lower back pain, and other various muscle pains. Ugh. ☹️

Probably largely the change in weather. It tends to trigger #fibro flares.

#spoonie #ChronicPain #fibromyalgia

@spoonies

halcionandon, to mecfs
@halcionandon@aus.social avatar

NOBODY WILL HELP ME.

WHAT DO DOCTORS WANT TO HEAR?
WHAT ARE THE MAGIC WORDS YOU WANT TO HEAR?

I’M BEING LEFT TO ROT.

HELP ME. 😭

#MEAwarenessHour
#PWME #MECFS #ChronicIllness
#NEISVoid #Spoonie #Disability #MedMastodon #ChronicPain #Endometriosis #LongCovid

@mecfs
@chronicpain
@chronicillness
@endometriosis
@medmastodon
@longcovid

halcionandon, to mecfs
@halcionandon@disabled.social avatar

NOBODY WILL HELP ME.

WHAT DO DOCTORS WANT TO HEAR?
WHAT ARE THE MAGIC WORDS YOU WANT TO HEAR?

I’M BEING LEFT TO ROT.

HELP ME. 😭

#MEAwarenessHour
#PWME #MECFS #ChronicIllness
#NEISVoid #Spoonie #Disability #MedMastodon #ChronicPain #Endometriosis #LongCovid

@mecfs
@chronicpain
@chronicillness
@endometriosis
@medmastodon
@longcovid

tomkindlon, to mecfs
@tomkindlon@disabled.social avatar

I'm considering going to this protest, "“Scrap The Green Paper” coalition calls on the Department of Social Protection to "Scrap the Green Paper" on Disability Reforms." outside Leinster House on Thur, Dec 7.

Main thing that might stop me is my health

https://beacons.ai/scrapthegreenpaper

@disability @disabilityjustice @spoonies @mecfs #chronicillness #chroniclife #ChronicPain
#Spoonielife #mecfs #invisibleillness
#ChronicIllnesses #Spoonies

MsHearthWitch, to random
@MsHearthWitch@wandering.shop avatar

Always fun to wake up in the middle of the night in so much pain you think you might need to hurl.

I would like a new spine, please. Just a whole new like nervous system too. That'd be great.

Or someone here to give me a massage, at the least :/

Shanmonster, to random
@Shanmonster@c.im avatar

This toothache is getting severe again. How do I manage another month before extraction? The pain woke me up. Argh. #toothache #ChronicPain

aby, to Autism
@aby@aus.social avatar

Doctor appt today, and he happily wrote up all the pain relief I needed prescribed for my shoulder.

I thought it might be difficult to get him to prescribe endone, panadeine forte, mobic, panadol osteo, and palexia.. but we went over how I was taking them all and he agreed that I was fine with how I was approaching it - and that taking such a variety of things meant actually taking less opioid based meds because I was able to keep on top of the pain with things like panadol osteo.

We also did my mental health plan and I hit a 40 on the K10.. which is Very Fucking High. We talked about that, and about how therapy is helping and that a big part of the 40 score is probably actually pain related as well.

He agreed that I showed great insight into my illness and that I was comfortable with being vulnerable enough to ask for help, so I get to skip hospitalisation (fucking yay!) because I have a good support system and I know how to access acute assistance if needed.

But still, 40 was even higher than I was expecting tbh. I'm usually around a 25-27.

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